Bad map

One reason I named our F.E.A.S.T. event in November "The Map Ahead" is that the eating disorder world isn't all using the same map. It would be one thing if most people agreed on the basic topography and were working on Triptiks for each patient: "Take the straight road down into that canyon, there's a road through a pass over there - but watch out for storms..." But we're not. Not only is the journey different for everyone each clinic and clinicians and advocate and book seems to be using a different map entirely.

I believe agreeing on a map is important. It doesn't mean everyone takes the same path, but at least travellers can benefit from knowing what's known to be safer, or better for their situation. We also deserve to know that right now, the map is mostly uncharted - but we've got most people presenting the map as if it is clear and agreed upon. We've got travellers who believe they are being advised based on a well-charted map, but really only a few unconnected islands have been surveyed.

One of the most painful examples of this overconfident mapping is the APA Practice Guidelines for eating disorders. I mean, what parent or clinician can fail to recognize the authority of the American Psychiatric Association, right? If THEY publish something it is surely based on solid ground in research and the membership and the eating disorder field would never let it stand if it lacked basis, right?

Not so much. The Level of Care Guidelines looks so authoritative, and I've had it cited to me by clinicians and journalists and parents many times. It has critical importance for insurance coverage. But the guidelines say that someone who isn't motivated to get better, isn't able to manage necessary meal and behavioral recommendations independently -  needs partial to full-time hospitalization or residential care. Those symptoms pretty much define an eating disorder, and virtually all people with anorexia nervosa.

Those recommendations preclude Family-Based Maudsley treatment and most outpatient care. Odd, since FBT and CBT are the only evidence-based treatments and both are primarily done on an outpatient basis - as is most eating disorder treatment.

So, someone I know tracked down the source of those guidelines and discovered that the only citation to support them is an unpublished paper presented at an EDRS conference in 1998**.

So, why is APA still distributing those guidelines? They have been approached on this, but no changes have happened. Why doesn't anyone protest or seem to care? I've puzzled over this.

Here's the answer I have come up with. Each treatment provider and researcher is using their own map. They don't worry about what map others are using. There is no central authority, no Pope of ED Cartography, to sanction using other maps. Each practitioner uses a different compass and as long as they don't bump into one another along the way they don't argue about it. Each is doing their best, and some I know are doing it very well.

But parents don't know the difference between them. Parents don't know that the map they're given is based on good intentions and not facts. Parents see that each clinician is giving slightly different directions but usually just blame themselves for not understanding.

There's no one to point out the map problem. It is in noone's best interests to do so, or to take the heat for it - people are too busy and they know their own intentions are good. But the parent community is starting to care. A lot. And I'm glad. So I ask you, who and how can we address the APA guidelines?

** La Via M, Kaye WH, Andersen A, Bowers W, Brandt HA, Brewerton TD, Costin C, Hill L, Lilenfeld L, McGilley B, Powers PS, Pryor T, Yager J, Zucker ML: Anorexia nervosa: criteria for levels of care. Paper presented at the annual meeting of the Eating Disorders Research Society, Cambridge, Mass, November 5–7, 1998


  1. C&M are working on it.

  2. Laura,
    It's kind of scary. I was planning on trying to reach DR. David Herzog next week to see when they will be revised. I'm sure it must be time!

  3. I'd really like to know the answer to your question. That is outrageous!

  4. I would encourage interested parents to look at the full guidelines themselves. The executive summary includes this text: "e) Providing family assessment and treatment For children and adolescents with anorexia nervosa, family involvement and treatment are essential [I]. For older patients, family assessment and involvement may be useful and should be considered on a case-by-case basis [II]. Involving spouses and partners in treatment may be highly desirable [II]."

    Kids with AN may need different care if they aren't able to comply with treatment.

  5. Reader caveat: I have made some strongly opinionated statements and have not done extensive fact-checking of a few things (although I did on most things). This post is mostly a vent, not an argument that I plan to present for critique, so I would love to hear other points of view, because I'm not insisting I'm right; I'm merely engaging in the debate.

    Interesting post! I had no idea that the level of care guidelines were 11 years old. Do you know what we were doing 11 years ago in other developing fields (e.g., technology)? We weren't using text messaging very much if at all, you couldn't buy a movie on blu-ray, the HPV vaccine had yet to be invented, national security was fairly low-profile in pre-9/11, and Thomas Insel had yet to declare anorexia nervosa a disease of the brain! And so we have moved forward based on all these previously mentioned advances, why not move forward based on the latest EBTs? I know that these researchers are busy folks (I personally know one of the presenters), but what is stopping the APA from meeting them half way and discussing some newer treatment guidelines? Are they (the APA) simply too busy working on the ever-delayed-forthcoming DSM V? I suppose it is a controversial stand, but I'm going to take it anyway when I say that as long as insurance companies benefit from old-school treatment guidelines (and they do in this case), there is no push for change. Why would the APA try to change guidelines if they get some sort of benefit by being in cahoots with medical insurance companies (mainly that it is insurance companies making life and death treatment decisions not the APA or doctors or treatment providers, which is a lawsuit monkey of their backs)?? If this counseling job doesn't work out, I may reinvent my career and become a lawyer. Now if I could just get this nasty ED behind me!


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